We the undersigned wish to register our strong objections to the GMC (General Medical Council) over the witch hunt campaign to discredit Dr Sarah Myhill. This is the 6th time that Dr Myhill has been subjected to such a hearing and enough is enough! This petition will be used to directly support Dr Myhill in her attempts to clear her name. (Please be civil and respectful in your contribution without making personal comments about any other individuals. Anything of this nature serves no useful purpose and will be deleted by the petition sponsor

This is the only positive ( if you can call it that) quote "More powerful still in developing their views was personal experience of the condition. This allowed practice nurses to identify with patients more easily, and to empathise with the symptoms they were describing:

'I suppose I differ in the way that I had a virus, a viral illness many years ago and it was so bad I could barely lift my head, and no-one knew the cause of it, all my blood pattern was normal, I just could not get up... I didn't know what was happening to me and I, I did feel, in the end, is this some form of depression? You know, is it medical? Is it mental? I just did not know. All I know is how I felt, absolutely dreadful. And it didn't matter what the cause for that was to me, it was how I was and that's all that matters, so, I do try to look at it that way.' (PN19)'

Her experience so closely mirrors mine that it is uncanny, except that following my virus, not knowing why I felt that everything requiered the effort it takes to wade through neck high thick mud, I made the mistake of saying to my doctor that I thought I was depressed - that was the start of a downward spiral from which I have never fully surfaced. The antidepressents he prescribed made me suicidal ( a known side effect ) leading to hospitalization for months...

" Seek congressionally mandated research dollars that more closelymatch the number of individuals impacted by the disease and theseverity of the illness. Millions of Americans are ill with ME and yetthe NIH allocates a mere $1.00 to $4.00 per year per person. The lossin economic dollars is conservatively estimated to be $9 billion peryear. With that kind of economic loss to our society, why isn’t thisdisease funded at the level of hepatitis C which is currently at $93million a year? Patients diagnosed with ME also suffer frominflammatory bowel disease, cognitive impairment, fibromyalgia,anemia, gall bladder disease, chronic Lyme disease, sleep disorders,chronic pain, depression, hormonal dysregulation, frequent viralinfections, heart disease, and cancer. Yet these sick Americans areforced to seek unproven medical treatments for symptomatic relief dueto the lack of scientific understanding of the underlying immunedeficiency that is driving this disease. "

The Whittemore Peterson Institute is deeply concerned that there willbe future complex biological diseases of unknown origin, which couldtoo easily be ignored as the result of the diagnosis of “complexsomatic disorders”. This would result in serious consequences forthose patients who continue to decline in health without appropriatemedical interventions.

The term CSSD may also serve as a diagnosis to be used by physicianswho currently lack the sophisticated diagnostic tools to describe anew and emerging illness, causing serious harm to those who are ill.Two such recent examples of diseases once categorized as somaticillnesses are multiple sclerosis which was originally called,“hysterical women’s disease” and gastrointestinal ulcers. Only afterthese diseases were pursued by those who believed in their physicalcauses with subsequent biological research, were medically effectivetreatments made available. Thus creating a somatic diagnosis, whenthere is in fact a physical illness, would relegate a population ofpatients to many more years of suffering, while basic biologicalresearch funding is denied.

For these reasons, the WPI requests that the APA thoughtfully examinethe purpose and possible unintended consequences for the encompassingsomatic category of illness, Complex Somatic Disorder, andemphatically requests that the DSM-5 task force reject CSSD, as amedical or psychiatric diagnosis.

in Westminster, London, on 24th May 2010.From the beginning Invest in ME have been attempting to show the international dimension to ME and how it requires international cooperation. Support such as this, coming from such respected and long standing organisations is something about which we feel very honoured.

The key to resolving, treating and curing ME/CFS lies in biomedical research.

However, apart from a knowledge of the biomedical research which is ongoing it is necessary for healthcare staff to be aware of the multiple symptoms exhibited by ME patients and of the possible treatments available.

The education of healthcare staff about ME/CFS now needs to break with the past and reflect the newfound knowledge about the pathogenesis of ME/CFS which high quality biomedical research is providing

This promises to be an interesting conference which will use as its theme the education of healthcare staff regarding ME/CFS.

Following the increased interest in biomedical research into ME brought about by the discovery of the XMRV retrovirus by the Whittemore-Peterson institute, the National Cancer Institute and the Cleveland Clinic it is important that healthcare staff as well as patients are acquainted with the current biomedical research and are aware of the consequences of ME.

I am a 56 year old physician with ME/CFS/atypical MS. I have a daughter with ME/CFS/Lyme Disease. I was an emergency physician. After I got sick, I recovered enough to have a private practice. I treated brain injury with neurofeedback and HBOT. In that context, I treated patients with Lyme/CFS/ASD/PTSD/mood disorders. I am also well versed in complementary, alternative, integrative, functional medicines and bioidentical hormone replacement.

When I read the paper in /Science/ about XMRV being highly associated with CFS, it was apparent to me as a physician and a patient that this was it. When I realized that the virus is sensitive in vitro to existing safe HIV drugs, I thought and still think that it is a miracle. In fact, I am stunned by the sudden overabundance of caution in the treating physicians. It would seem that nobody wants to try it. Despite being given the key. Never mind that we are a patient population that has been experimented on for decades.

Frankly, I didn’t see what I had to lose. We are culture positive at VIP Dx. We have tried everything to no avail. So with the assistance of a wise, compassionate friend who is an ID doc, and a smart family practitioner, I started AZT 300mg on March 4 and Isentress 400mg on March 11, both twice a day. It was my intention to wait for some sort of confirmatory data before reporting anything publicly. But watching all that isn’t happening with respect to figuring out how to help the patients, I don’t think that anything should depend on how a few patients do, especially a patient like me who may have been infected for as many as 40 years. I don’t think it is wise to wait while scientists argue about the validity of lab tests. There are too many who need help emergently. HAART is a safe existing protocol for AIDS which includes three drugs which inhibit XMRV in vitro. We even know that the three possible combinations of those drugs are each synergistic in vitro. But, the sickest will die while the scientists try to figure it out, so it seems to me that it is up to the doctors to treat with the information available. As always.

I believe that there is a rationale for treating the sickest patients now. Physicians are allowed to prescribe drugs off-label. I think they should be testing their patients, at VIP Dx, the only commercial lab right now that seems to be able to find XMRV in peripheral blood, using the methods validated in the /Science/ paper. *I would be happy to share with any physician willing to consider treating.

*I certainly don’t expect that it will be as easy as taking a few pills. There is lots of downstream damage that will need to be treated. But treating all of the problems that have been identified over the years in this patient population will likely be more effective for many more patients than it has been in the past. We will finally be able to identify the commonalities and differences in the various neuroimmune cohorts. *Always treat the causative agent if you can.* Then modify the host environment to the best of your ability so that whatever is left functions at its highest possible level.

In my opinion, too many of our physicians have gotten caught up in their own ideas and lost track of the goal, which is to get the patients well. As a group, doctors and patients alike, we must support a willingness for the truth to come out, whatever that is. New discoveries have to be incorporated into our thinking as they occur.

I thought that it would be OK to sit back and let the dust settle. Whenever momentous discovery happens in medicine, there is a flurry of resistance from those who have been made wrong. But this is uglier than that. Now the WPI is in need of funding. Connect the dots. And the band is playing on while we go down…

I am no activist. I am politically naive. But I know the power of the internet. I know how marginalized we have been as patients. The people at the WPI are our friends. They are fighting for us, when no one has. As a community, we are often too sick to fight. So we have to let others slay the dragons for us. We have to support them in any way we can. Read: *SEND AS MUCH MONEY TO THE WPI AS YOU CAN AFFORD*. Please tell everyone you know. Pull out all the stops.

A specialist in musculoskeletal function and pain (Physiatry), fibromyalgia doctor Mark Pellegrino suggests many “basics” that can help those with FM and other painful conditions to approach daily chores in ways that are kinder to the muscles. An FM patient himself, he knows that ‘every little bit helps.'

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Whoever invented fibromyalgia never had to vacuum!

Chores can be a difficult challenge for someone with fibromyalgia. I always ask my patients if their fibromyalgia interferes with activities in the house and they almost always tell me “yes” (even the men!). The bending, reaching, lifting, and pulling required of these tasks causes increased pain and often leads to painful flare-ups. The fibromyalgia homemaker/maintainer is faced with the dilemma of wanting to have a clean home, but not having the physical abilities to complete these tasks without pain. What can you do?

1. Stop doing housework altogether. Yes, just go on strike! See if the work gets done by others. Watch as nothing gets done and your house becomes a health hazard! You can’t stop everything, but daily or weekly tasks can be analyzed to determine if they can be done less frequently. Consider a rotating system where different parts of the house are cleaned on different days and not all at once. Instead of doing one heavy task in one day, spread it out into several mini-tasks over the course of a week.

Your whole house may not be perfectly clean all the time, but parts of your house are perfect every day!

2. Have someone else do it, with you supervising. This is a good way to teach responsibility to your children (or your spouse, the biggest kid of all). The shared housework concept divides the responsibilities among the entire family, and you do the share of tasks that you can comfortably handle.

The heavier tasks (vacuuming, carrying laundry loads) should be delegated to other family members. You supervise - and be sure to look busy at all times!

3. Pay someone else to do it, if you can afford it. Try to have the paid person come weekly or every other week to do the major cleaning, scrubbing and vacuuming. You can do the minor “touch-up” work in between visits. Bribe your kids to work cheap!

4. Modify the way you are doing particular tasks. This allows you to continue doing the homemaking, but do it in a way that is kinder to your muscles. Since homemaking chores are done with your body in unusual and awkward positions that aggravate your fibromyalgia, proper attention must be paid to "fibronomics."

Friday, April 16, 2010

A Sudden Illness - How My Life Changed, by Laura Hillenbrand "I returned home, lay down, and tried to figure out what to do. My psychiatrist had found me to be mentally healthy, but my physicians had concluded that if my symptoms and the results of a few conventional tests didn't fit a disease they knew of, my problem had to be psychological. Rather than admit that they didn't know what I had, they made a diagnosis they weren't qualified to make."

I hope recent advances (XMRV & the Canadian SM neurological classification) make this attitude an historical abberration rather thhan the norm as it is now.

This means that no one in Ontario who suffers from ME/CFS can ever again be told by a doctor that ME/CFS does not exist. If they do, tell them to look up Diagnostic Code 795. 'Chronic Fatigue Syndrome' has been given the

OHIP Diagnostic Code 795 by the Ontario Medical Association as a Neurological Illness!

Ideally, we wanted the Diagnostic Code to read: 'Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, but we had to take what the Ontario Medical Association approved. The most important fact is that 'Chronic Fatigue Syndrome' is now officially recognized as a Neurological Illness in the Province of Ontario, Canada. Perhaps the other Provincial Ministries of Health in Canada will follow?

It has taken many years to get to this point of lobbying, meetings, etc. With the publication of the Canadian Definition, which was initiated by the National ME/FM Action Network, this made this possible. Over the last several years, The Myalgic Encephalomyelitis Association of Ontario has been in meetings with the Ontario Ministry of Health to lobby for a Diagnostic Code and we are so pleased that we now finally have one. Dr. Alison Bested did a fantastic presentation to the Ontario Medical Association. What does it mean to have a (CFS) code"? It means that:

1. NO physician can ever say again that our illness does not exist;

2. All physicians in Ontario will receive a notice from OHIP of our new CFS Diagnostic Code 795 as a Neurological Ilness;

3. The fact that the Ontario Medical Association gave CFS a Diagnostic Code as a Neurological Illness will cause concern to Insurance companies;

4. It will help individuals applying for Ontario Disability Support Program and the Canada Pension Disability Plan;

5. It now makes it possible to collect Statistics in Ontario; and

6. It will hopefully give incentive to the other provinces to follow.

NOTE: The CFS Diagnostic Code is given to someone who is being diagnosed with CFS for the first time. The code is not a time-based fee code. Follow up appointments for any illness (heart disease, MS, CFS, etc. at the present time is usually billed as Supportive Therapy if you take more time than a normal appointment.

Tuesday, April 13, 2010

"Whittemore Peterson Institute – Throwing Down The GauntletThe rumor mill surrounding the XMRV pseudo-replication studies can finally be put to rest. Any further speculation regarding the cohort used in the original studies, the methodology used in replication attempts, and the efforts made by the WPI to supply reagents and positive patient samples (which went unused) is pointless. The line in the sand has been drawn.

Once again, we need to support the science. Please take a moment and make whatever donation you can to the WPI Institute. "

I truly hope this gets the required response and the XMRV debate moves forward